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Using Supported Decision-Making to Promote Value-Aligned Research Participation
Shen Pan1, Robert D Dinerstein2, David Wendler1
1Department of Bioethics, https://ror.org/01cwqze88National Institutes of Health, United States.
Summary
Supported decision-making helps individuals with intellectual or cognitive disabilities make authentic choices in clinical research. Integrating dialectical support ensures decisions align with personal values, enhancing self-determination and research participation.
Area of Science:
- Bioethics
- Disability Studies
- Clinical Research Ethics
Background:
- Individuals with intellectual or cognitive disabilities often require support for decision-making.
- Ensuring value-aligned choices in clinical research participation is crucial for autonomy.
Purpose of the Study:
- To explore supported decision-making (SDM) for value-aligned choices in clinical research for individuals with intellectual or cognitive disabilities.
- To identify challenges in SDM for this population and propose solutions.
Main Methods:
- Conceptual analysis of SDM principles.
- Identification of specific challenges: integrating competing values and unpacking underspecified values.
- Proposal of integrating dialectical support into SDM.
Main Results:
- SDM enhances self-determination and increases the likelihood of value-aligned decisions.
- Challenges arise when individuals must integrate multiple values or unpack vague ones.
- Dialectical support offers a structured dialogue to explore and apply values.
Conclusions:
- Supported decision-making, enhanced by dialectical support, can improve authentic decision-making for individuals with intellectual or cognitive disabilities in clinical research.
- Addressing value-related challenges is key to promoting ethical and self-determined research participation.
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